We have received a number of queries relating to our involvement in the Department for Work and Pensions’ (DWP’s) testing of the draft criteria for the new Personal Independence Payment (PIP). 

PIP is a new benefit that will replace Disability Living Allowance (DLA) for adults. It will be introduced in 2013.

We have produced this Q&A to explain our involvement in the testing. If you have any further questions, please email policy@nas.org.uk

To find out more about the Government’s proposals to replace DLA with PIP, go to www.autism.org.uk/whobenefits

What is our involvement in this process?

In May, DWP asked for our help in finding volunteers to help them test their draft criteria for the new benefit, PIP, which will be replacing Disability Living Allowance (DLA) in 2013.

We are not involved in the process of testing the criteria. We are not advising the DWP – our role was to supply the names of people with autism who expressed an interest in volunteering to help test the criteria.

Why are we involved in this process?

We have significant concerns about the proposed reforms to DLA. We have been campaigning hard ever since the Government announced that it was replacing DLA with PIP last year, to ensure that the needs of people with autism are taken into account in developing the new benefit.

In March, we launched a new campaign called Who Benefits? which set out the importance of DLA for adults with autism. As part of the campaign, we have been clear about our concerns that the reform appears to be driven by cost savings and have stressed time and again how important DLA is for people with autism.

Our campaign set out clear recommendations for the Government on how to ensure that adults with autism would be able to receive the new benefit. 

One of the recommendations of our report was that any new assessment for the benefit had to be tested with adults with autism to make sure it was appropriate. The fact that DWP has shown a particular interest in testing their proposed criteria on volunteers on the autism spectrum should be viewed as a positive result of our lobbying.

What are the benefits of taking part?

We agreed to find volunteers to test the draft criteria because we want to see the criteria improved.

If we were not involved, that would mean it would have been unlikely that the draft criteria would have been tested on many people with autism. Therefore the final criteria for PIP would be more likely to exclude the needs of people on the autism spectrum.

Our involvement in finding volunteers will allow people with autism and their families to demonstrate the reality of their lives to the Government and influence the new benefit for others with autism.

What else are we doing to influence the changes to DLA?

1. As a result of our Who Benefits? campaign, over 3,500 people have emailed their MP setting out the importance of DLA for them and asking their MP to make sure that the new benefit takes into account the needs of people with autism. Follow this link to email your MP.

2. We organised a mini lobby of Parliament in March, giving people with autism and parents an opportunity to explain face-to-face with their MP the importance of DLA to them.

Disabilities Minister Maria Miller attended the session. She has since said:

We agree with many of the points raised in The National Autistic Society's recent report on DLA reform, Who benefits?, and we are looking closely at how these recommendations can be incorporated into its design.

3. We lobbied for a mini debate on the impact of the reform on people with autism in the House of Lords. 

We have also been working closely with MPs and Lords as the Bill that will bring in the changes to DLA passes through Parliament. We have met with MPs and Peers and sent them written briefings, which has resulted in them raising the specific issues of autism and PIP in Parliament.

As a result of our lobbying, the Government has committed to:

  • not forcing everyone to attend a face-to-face assessment.  We are pushing hard to find out more detail about this.
  • encouraging people who are attending an assessment to take a parent/carer or advocate with them.


4. We have met with civil servants to raise our concerns about the reforms. We have also responded to DWP consultations on the changes proposed.

5. We were part of the Hardest Hit march in May, which was about the wider impacts of Government reforms on people with a disability. We facilitated the attendance of people with autism and their families.

6. We are part of the Disability Benefits Consortium – a consortia of a national coalition of over 50 charities and other organisations committed to working towards a fair benefits system – and have been working through them also to raise our key concerns with MPs and Peers.

The Consortium is organising events at the political party conferences in the Autumn, which will give further opportunities to raise our concerns about the changes.

7. We will continue to put pressure on the Government as the Bill passes through Parliament, to ensure that the needs of people with autism are taken into account as the changes are taken forward.